"Everyone experiences dementia differently"

I always wanted to be a nurse. My mum was a nurse too – and seeing her develop memory problems was what led me to my first role, as a dementia outreach worker, helping people understand about the condition.

After my children had grown up, I did my nursing degree and started work in palliative care. I've never looked back. I'm very proud to have worked in this field for 36 years, over seven of them with Marie Curie.

End of life dementia care must be person-centred

End of life care for dementia is different to care for other terminal conditions. People with dementia aren’t always able to express what’s troubling them – that could be pain, anxiety, fear. There are over 100 types of dementia, including Alzheimer’s disease, which is the most common form. And everyone experiences this disease differently.

So, it’s paramount that the care we give really is person-centred; and that we continue to assess people too, to ensure we’re meeting their needs as they change. Dementia isn’t curable. People who have it will die with it. And it’s life-limiting; but people can be in the end stage of their dementia for many years. When I meet a patient, they might be mobile and walking around, or they might need to be nursed in bed.

The first thing for me is always to go and meet that person, make my own clinical assessment, and really look at the whole situation.

We can assess someone with dementia’s needs, even when they can’t communicate them**

As specialists, we have to work out how someone is feeling, what might be causing that, and what they need – even when it can’t be expressed.

That’s why patients are often referred to the Marie Curie Palliative Dementia Service in South West Wales –where I work – when they have another terminal illness, such as advanced cancer, as well as dementia. Those referrals can come from family members, a hospital consultant, a GP or a social worker.

We’re here to support family and friends as well

Often the person who has dementia isn’t aware they’re dying. It’s those caring for them that are. We’re here for them too. We help them to understand and acknowledge everything they’re feeling – or not feeling – the guilt, the love, the memories.

Many people experience anticipatory grief, perhaps over many years of caring for their loved one, and they may find they feel some relief after they’ve died. We allow as much space and freedom as possible for all these feelings. There’s no right or wrong way to grieve.

Supporting people with dementia and those close to them to plan ahead

Living with dementia, or caring for someone who is, can very hard. But the experience of dying, or of bereavement, can be more positive when the person’s preferences are known, and when everyone knows what to expect.

I’ve been shouting about the importance of advance care planning for a long time. We can support people through this simple process of documenting their wishes before they become more unwell and less able to express them.

It can be little things – I give the example of liking to have my hair tied back, so I’d want someone to do that for me if I couldn’t – as well as bigger issues, such as who might have power of attorney, or moving to a care home.

If these things aren’t documented, the person with dementia’s loved ones, or the professionals caring for them, might not know. We also talk through things like changes in eating and drinking or what to expect towards the end of life.

The need for end of life dementia care is growing

There’s a huge – and growing – need for dementia care at the end of life. Dementia, including Alzheimer’s disease, was the leading cause of death in England and Wales in 2022.

Our population is aging. And more and more people now live with multiple terminal or life-limiting conditions.

I’m driven by knowing we can give people with dementia a better end of life

I’m often moved by the patients I care for, and their families. I might bump into someone in the supermarket and they’ll just hug me. That means a lot. The thing that drives me is being there for people who are dying with an illness we can’t control, and supporting those that matter to them. We can help. We can make a difference.

If you, or someone close to you, is living with dementia, you can get practical and emotional support through our telephone Support Line and online resources, and our Companion service. We provide care in our hospices and in people’s own homes across the UK, and through our specialist dementia services in some areas in Wales.

You can help us provide more expert end of life care to people living with any terminal illness, including dementia. Donate today.